FAQ

A Biobank is a facility that stores and shares human biological samples for research purposes. Biobanks are custodians of donor samples and data. Biobanks do not own your sample or data. Instead, with your permission, they store, study and share it with a community of researcher collaborators.

Historically, the HD Biobank was created through the generosity of the Huntington’s Disease community. Thousands of family members donated blood samples to study this genetically inherited neurodegenerative disorder. We still have a relationship with these families and we honor them in our name.

As we expended our services across Canada for HD families, we came to understand that Canada needed a national resource for collecting samples for research into all neurodegenerative brain disorders. We collect samples from those with many forms of neurodegeneration including but not limited to: HD, Parkinson’s Disease, Alzheimer’s Disease, Frontal Temporal Dementia, Lewy Body Dementia, and ALS.

No. At time of death, pre-arranged transport will be notified to deliver the donor to the nearest hospital with the capacity to facilitate your donation. Our team will collect, process and store only those samples to which you have previously consented. Within 24 hours, the donor’s body will be returned to the funeral home of your choice where funeral preparations can be completed. The tissue samples will be collected carefully and discreetly, allowing for open casket funerals if so desired.

Yes. We are collecting, and sharing, only the samples you consent to share. We are incredibly honored to be trusted with any samples you donate but understand that you have a right to change your mind. Please contact us anytime if you wish to withdraw your consent. 

Yes. We welcome samples from all Canadians with or without a neurodegenerative brain disorder. All samples hold valuable information for researchers. 

The HD Biobank is located at the Centre for Molecular Medicine and Therapeutics. Our mailing address is:

HD Biobank at UBC CMMT
950 W 28th Avenue, Rm 3007
Vancouver, BC, Canada
V5Z 4H4

Yes, we welcome donations from anyone that wants to be a part of the research. Please contact the biobank admin at hd.biobank@ubc.ca and we will make our best effort to arrange for your donation wherever you may be. Our collection network spans all provinces in Canada. Some rural Canadians may not be able to participate in blood or brain donations however, all Canadians can participate in saliva donation.

No. The HD Biobank does not share your personal, identifying information with anyone. If your sample is shared as part of a research study, your personal information will be de-identified. The researcher will only have access to necessary medical history such as affection status, ethnic background, and age. They will not have access to identifiable information such as your name, address, or contact information. 

No. We do not give updates to individuals or family members regarding their samples/data. However, researchers regularly publish information about new findings. As we learn of the research using these samples, we will update our website.

No. Your sample donation is a gift to the research community. Any expenses associated with sample donation such as blood draws or shipping will be paid by the HD Biobank.

Blood from Canadians.

Saliva from anyone worldwide.

Brain/tissue from Canadians pre-consented for after death donation.

The HD Biobank is currently funded by individuals in Canada, just like you. We are grateful for the generosity of the community. These funds help to cover our operating costs including sample collection, storage, and personnel. We can not do this without your support.